ash128083

Hi Jayne, I haven’t been active on this forum for a few years now. The end of 2020 things started to get better for me and then I became pregnant in February 2021. My whole pregnancy and up until December 2022 was pure bliss for me. ZERO outbreaks. But then slowly but surely I started having issues again, occurring every 3-4 months, now I feel like it’s starting to happen monthly again. I’m slowly starting to spiral into a dark hole again. I just turned 39 yesterday and can’t help but think that I’m in perimenopause as I keep reading outbreaks will become bad during that time. I really think mine happen because of hormonal issues. It makes no sense that for 2 years being pregnant and post partum I was fine. Ive been on suppressive therapy since 2011ish. Nothing seems to help, although, I do feel relief when I use monistat for the week I’m flaring. It feels more like a yeast infection when it happens but I don’t think anyone can get a yeast infection that much. I never get a cluster of sores that are typical of the virus. I have an annual exam scheduled soon and it’s time to see an infectious disease doctor. I keep putting it off. This has affected my daily life tremendously. I’m at my wits end. Nothing makes a difference in terms of what I eat or supplements I take. A huge trigger for me is sex even if Im very lubricated. I feel bad for my husband because I constantly make excuses to avoid intimacy. I keep waiting for this new drug to come on the market, its in the end of clinical trials. Something has got to give.

Hi! It’s been a while since I’ve posted in this form but I’m currently in the same boat. I was diagnosed around in March 2009. I don’t remember having a bad initial outbreak. I just happen to be at the doctors for an annual exam and I had what I thought was our bump that my doctor ended up swabbing and then called me and said it was positive for HSV, didn’t tell me what type and told me you didn’t matter since the disease manifests itself the same way. In the beginning, I had typical outbreaks, a sore that would emerge, and then eventually heal and this happened every couple months so I eventually asked to go on suppression therapy and was given a very low dose of acyclovir at the time, 400mg a day. For the next nine years, the only time I would have an outbreak when I was on birth control pills, this would happen every 3 to 4 months and it was more of a yeast infection type thing. I would never get any sores, just a very inflamed, swollen, irritated vagina. Birth control pill I didn’t have any outbreaks or issues for nine years. Fast forward to 2018, eight months after I married my husband, I had the absolute worst outbreak of my life for no rhyme or reason. Again, no sores, just severe swelling, irritation, burning, and itchiness. This would happen once a month while on suppressive therapy. I found this forum, which was a godsend for me. Finally people like me! My husband was never Diagnosed and has never had any visible outbreaks, so I’m not sure if he has it or he just has a really good immune system. I started taking an array of supplements that people swore would fight. The virus completely changed my diet and nothing changed. This is impacted my daily life tremendously, and I have been suicidal on and off for years. My doctors have not been much help because they have no explanation for it. They just changed my medication to 1g of valcyclovir a day. I did eventually make the correlation that this would happen during the week right after my period started to calm down a little bit around the time of Covid and I became pregnant with my last child. During the whole pregnancy and up to her first birthday, I experienced no symptoms whatsoever. And then slowly, but surely I would get the yeast infection like symptoms every 3 to 4 months. During that time I will take an additional antiviral and get over the counter monistat for 7 days and I will be fine in a week. Lately this has been happening more frequent and I’ve been trying to write down every time it happens for my next doctor appointment. I want to see an infectious disease doctor, but I’m not sure they’re going to be much help either. I am going to be 39 this week and I feel like I am in perimenopause and have low estrogen or something which is causing this. I also get good sleep, I work out six days a week, I’ve tried to completely change my diet again, but it makes zero difference so this must be a hormonal thing. When I get these yeast infection type outbreaks, it completely sends me into a spiral. I can’t get off the couch. The pain and discomfort is so severe. It’s hard for me to take care of my children, the physical and mental state of all too much. I’ve had my doctors test me for underlying auto immune things and always my blood work comes back normal. The only other health element I have is asthma and I wonder if years of being on prednisone has completely ruined my immune system. I haven’t been on that in almost 2 years, but I do get a lot of respiratory infections, where I need to take an antibiotic and I’m on daily inhalers. I’m praying that one day. I wake up to the news telling me they’ve approved a vaccine or a cure or a better medication to handle this disease.

What is gene-eden-vir and how do you get it?

Hi @Milkofamnesia . You are definitely not alone! I’m a 38 year old woman and I was diagnosed at 23/24yrs old. The first year I would have a “typical” outbreak with a sore that would pop up and heal and then I went on suppressive therapy. I had 7-8 of no outbreaks and then all of a sudden, without any change in my lifestyle, diet, stress, etc., I started getting constant outbreaks that were not typical. It was almost like constant, severe yeast infection type symptoms. Anytime this would happen I would increase my Valtrex and run to the store and get monistat. Not to be TMI, but my symptoms would be internal, burning, redness, inflammation, and irritation I would not have any sores. This went on for several years and I became severely depressed because I could not take the mental or physical pain anymore. I tried to change my diet and eat, super healthy. I took all kinds of supplements that they say would help, and nothing made a difference. I was at a loss. I’ve been with my husband for 12 years and we have three children. I was diagnosed before I met him, and we have always been very careful for him not to contract this and he has never had any outbreaks himself. It seems like every month when I was ovulating is when the symptoms what happen. So I started increasing my meds to 2 g a day that week in the summer of 2020 things got a little bit better. Then, I got pregnant with our last child in February 2021 and the whole pregnancy I did not have any issues whatsoever. I thought maybe I had hormonal issues so after I had our daughter, I went on birth control, which seemed to help a little bit, but 1 year after giving birth, I got one of these yeast infection type things again, and it’s been happening typically every four months sometimes every other month where again I increase my meds and buy a seven day treatment of monistat. I’m starting to feel like I’m at a loss again because this is happening all over again for no rhyme or reason. I keep debating on going to see an infectious disease doctor, but I don’t want to waste my time. I just don’t know how I can live the rest of my life like this. I also worry about how things are going to be when I’m an elderly woman I thought as time goes on your body is supposed to be better at fighting the virus, but the more and more I see on these threads that’s not the case and I don’t know why doctors aren’t doing more to help those who are suffering with this.

I am also curious if the vaccine will bring on outbreaks. I will not got vaccinated because I am so worried it’s going to suppress my immune system and set off something in my body making me have constant outbreaks again. I had COVID in January 2021 and I would rather get it again then deal with the physical and mental agony of constant outbreaks. Ive had the virus for 13 years. After a year with it I started daily suppressive therapy. That worked great for 8 years. Then all of a sudden out if nowhere I got an INSANE outbreak, far worse then my first one. And every month it would happen again, however, it wasn’t herpes typical. I wouldn’t get an actual sore, just horrible pain, burning, itching, redness. I became extremely depressed. No matter how much antivirals I took NOTHING helped. I dealt with that for 2 years. I was suicidal. I switched to valtrex and tweaked the dose. It seemed like it would happen when I was ovulating. I think my issues are hormonal. Finally things calmed down in the summer of 2020 I became pregnant in February 2021 and have not had any issues sense. I thought the pregnancy and after that would start something again but thankfully I haven’t had any issues. Because of that I will not be getting the vaccine.

I’m an asthmatic and recently contracted COVID. I believe my husband brought it home from work unfortunately. I’m on day 8 and my breathing is getting real bad. My doctor gave me azithromycin and prednisone if I feel like I need it. We all know prednisone and any immunosuppressant don't mix well with herpes. Years ago I would have zero issues being on prednisone for my asthma but starting two years ago I’ve had bad herpes symptoms even while on antivirals ehich I’ve had to tweak my dosing etc. The passed several months I’ve felt great “down there” so I’m worried starting prednisone for my breathing is going to cause a downward spiral of outbreaks. Has anyone been on prednisone and done anything to keep outbreaks from happening? Do you think increasing my antiviral dose would help? Its bad enough battling covid I really can’t handle the mental and physical pain of an outbreak right now 😕

Famvir is going to be the next step for me if this gets out of control again. Just makes no sense that for 8 years I was symptom free and then all of a sudden it got crazy. There is a new drug that is coming out for those who don’t respond yo what is out all ready, I forget what its called.

Hi all, It’s been a little since I posted. I have a question that I’m not sure if anyone can answer. I have hsv genitally, taking valtrex etc. outbreak control have been good for a few months, I think for me a lot has to do with my hormones. Anyway...I scheduled an appointment for Botox for my crows feet around my eyes. Does anyone know if Botox can cause an outbreak? I was filling out the medical form for the office I’m going to and I did not check off the box that listed “herpes-genitally”. This isn’t my doctor and I’m not comfortable disclosing that to someone who I just met who is giving me some botox, but I do want to know if anyone has had botox and it has caused an outbreak. I thought it was weird on the health form that genital herpes was listed under “auto immune” problems and not under the the “gynecological/std” column. So it got me wondering, shit, could botox in my face cause a genital outbreak.

I dont think I ever had those levels checked. For the past 3 months I’ve felt really good down there though. Nothing has changed in my life in terms of stress or diet. I think for me a lot of it is hormonal all of a sudden. My doctor prescribed me more antivirals so the week that I ovulate which is usually when I start having discomfort I can take 2-1g instead of one. I feel like thats made a big difference.

Hi! I’ve had this for about 11-12 years. The past 2 years I have been getting HORRIBLE outbreaks despite being on antivirals. I went 8 years of no symptoms or outbreaks on the meds, met a man fell in love and got married. Then 8 months after our wedding I was hit with the worst outbreak of my life. Even when I first contracted this I didn’t even know I had it because it was so mild I thought I had an ingrown hair. I dont get sores anymore just intense discomfort, swelling, itching etc. It happens once a month the day after my period ends for about 4-5 days. I double up on my Valtrex usually and it goes away but the next month it happens again. I also take multivitamins, zinc, lysine, probiotics, I eat well, exercise and sleep well. It makes no sense. I wonder if I have a vitamin b12 deficiency and thats the trigger. I am also scared to be intimate with my husband. Its taken such a toll on me. He’s never shown any symptoms and I am so scared he’ll get this. Idk why things would get worse with this virus. My doctor’s are no help. Idk how much longer I can deal with this.

@GreyhoundLover I think a lot of people have a negative reaction when herpes comes up because of the stigma surrounding it. There are so many people with this and everyone is afraid to talk about it which is why theres so much stigma. I only have one friend who I’ve confided in. She has oral herpes which is why I told her I have it genitally. She was so comforting and was like “it’s literally not a big deal, yes its uncomfortable when you have flare ups but don’t let it define you or let peoples ignorances define you.” My therapist was also very comforting. You deserve to be happy and find someone who makes you happy. Don't just shut down love and accept being single and celibate because of this. I know its hard but there are great people out there that herpes doesn’t matter to.

@Sumshine Can I ask you something? Where you have had this virus for almost 40 years, were there ever times where the virus was worse and you would have more outbreaks or have your outbreaks been the same throughout the years? How long have you been on Antivirals and do you find that the Antivirals have worked steadily for the time you’ve been on them? I’m trying to get some insight on the virus as time goss on. I’m 35 and was diagnosed at 24. The first few years I had typical outbreaks with a sore every few months. I start antivirals and for 8 years had zero outbreaks. All of a sudden 2 years ago this virus started coming out with a vengeance and I’m at my wits end. Also the nature of the outbreaks have changed. I do not get sores anymore just swelling, irritation, nerve pains, sometimes redness bot internally and externally. Idk if this will be the rest of my life or if things will ever go back to how they were. I also eat well, take supplements, work out 5-6 days a week, etc I’m not stressed. Looking for some hope.

I’m in a similar boat. I’m. 35yr old femald from the US. We don’t get any help here either. Just “the suppressive meds will help”. Well what do you do when they don’y help? The more and more angry it on these different forums the more I see that the medications do not help, whether the pharmaceutical companies are making them different on this virus mutates, there are more and more people like us who are suffering with no help. And the doctors either don’t care to find a solution because this is an a deadly disease. I was diagnosed at 23 or 24. I believe I contracted this from my boyfriend at the time. Stupid me. All of my friends slept around but I was the one ti get this being in a relationship. First few years I’d get a typical sore that would eventually heal. After a year I went on suppressive meds. I had zero outbreaks zero symptoms for 8 years. I met a man who I fell in love with, we got married and had a child, and then all of a sudden 2 years ago I has the WORST outbreak of my life. I thought your body builds up immunity. What a lie. Since then the symptoms have been constant. I changed from acyclovir to valtrex and its helped a little. I take vitamins, exercise and sleep well. I do all the right things and yet I still suffer, mostly during my fertile week. To make it worse I never told my husband. I never had symptoms and there were a lot of things going on in our relationship that always kept me from bringing it up. Not that its an excuse. So now I suffer to myself, double my medication in an attempt to fight the virus, withdraw from my husband and kids, avoid sex...mentally I can’t take it anymore. I’ve kept this a secret for so long that I’m petrified of what his reaction will be. Sorry for venting. I hope and pray that things get better for you. That a new treatment comes out or something.

Ladies who have herpes and are pregnant or have been pregnant: were youre outbreaks worse or better during pregnancy? Were you on suppressive medicine or no? I started having a lot of genital issues starting 2 years ago after having the virus for 10 years. First 8 years on suppressive meds I had zero issues, 2 pregnancies with zero outbreaks. Mu husband and I are debating on trying for another baby but I’m so worried where I have been having symptoms monthly while on the medication. Theres times where it’s hard for me to “mom” because of the discomfort I have as well as the mental state it puts me in. Just looking for some insight.

You sound like a really great guy Joe. The stigma around this disease is really unfair and makes a lot of us suffering ashamed and hate ourselves. Like you said, this can happen to anyone. Whether you have slept with one person or 25 people, it only takes one. You can even get this genitally from using protection because condoms don’t cover everything and also from oral sex if someone has coldsores. It doesn’t matter if it’s type 1 or 2 it manifests the same way and the fact that some people don’t have symptoms or symptoms show up years later make it a very tricky disease and very easily spreadable. I give the woman you’re seeing so much credit. It is extremely hard to disclose because of the stigma. The first thing that comes to mind when you’re diagnosed is “who will love me now?” I think the best thing you can do is be there for her. Communicate with her. I don’t know of therapy is the way to go unless she would want to because of her feelings surrounding it. If she is on valtrex for suppression that will usually cut the transmission rate and if you do use condoms that will lower transmission even more. However, everyone is different. You can still contract this even if she doesn’t have an outbreak, but, you may be someone who’s immune system can fight off the virus and it may not be an issue for you saying she did give it to you. To be honest, from my experience and from talking to others on this site, the medical professionals are useless. They give you textbook information and a prescription for antivirals and send you on your way. Because the virus won’t kill you, like cancer, I don’t think they really care to work hard for a cure or better treatments. But I pray everyday that they do. I can imagine it is nerve racking thinking “if I’m with this person for a few years and I contract this, and we break up, then what?” Nothing in life in certain. It is something that can be managed. It’s a chance you have to take like anything else. Since you are the non H person in the relationship I would like to send you a message and ask for your advice on my relationship if thats ok.